Tuesday, 4 August 2015

My diagnosis and the hours that followed.

“What do you think is going on?” a kind haematology doctor said. She reached out and held my hand with her own cold hand. “Do you want me to spell it out to you?” she asked. I nodded. She crouched down next to the bed and considered me closely, before saying softly “It is a leukaemia”. 

I swore loudly.

I didn't know what else to say. “How long have I had it?” I asked, searching for something to fill the silence. “Not long” she replied, “maybe a few months or weeks. Do you want to call your family?” I said I would after I had been to the toilet, and when I returned they had drawn the curtains around my bed in the middle bay of the six-person all-female acute medical ward where I had not slept the previous night.

I sat behind the curtain, listening to the breakfast being served, and Paloma Faith singing on the radio. A leukaemia. The phrasing fell oddly on my ear. In retrospect, my consultant probably said “a leukaemia” because she has experience treating many different manifestations of the disease. But to me leukaemia was leukaemia. And I must have a leukaemia, not the leukaemia. Not the leukaemia people die of. Not real leukaemia. 

First I rang my fiancé Matthew. He was working from home so answered his mobile quickly.

“Can you come to the hospital?” I asked.
“Is everything alright?” he replied.
“No, not really. Just come to the hospital now.” And I hung up.

Then I called my mum, she answered cheerily and asked if the doctors had been round that morning. I asked her to come to the hospital. She asked why. I said I would tell her when she got there. She said that she wanted to know if something was wrong. I could sense a losing battle so I said, with a voice beginning to crackle and increase in pitch, “I’ve got leukaemia”. She began to cry and said she would be there as soon as she could.

Then I sat alone for 20 minutes behind the curtain of my bay, listening to noises of people coming and going. A few weeks or months. I thought about what I had been doing over the last few weeks and months, wondering when that precise moment was. I thought about the day almost exactly one month before when Matthew proposed on a whale watching tour boat which we’d taken from Cape Cod during a holiday to Boston, Massachusetts. I’ve got a feeling that that day Karma and Mother Earth had a chat and decided that things were going a little too right for me lately – I had only one year to complete on a midwifery degree which I adored, Matthew and I were moving in together and now, we were getting married. Something had to give.
Minutes after our engagement while on a whale watching tour off Cape Cod
After arriving home I came down with a pretty bad case of tonsillitis. This sucked more than usual because I wanted to be showing off my antique 1920s 18ct gold sapphire and diamonds engagement ring. I wanted to enjoy attention and awe being lavished upon me. Instead I was at home in bed with my head in a bin. I’d had tonsillitis before so I knew the drill: a few days of agony, antibiotics, get well soon. My GP prescribed some penicillin and I dutifully took my tablets with fistfuls of painkillers while lying in bed feeling sorry for myself. But the course of antibiotics finished and I was no better so I dragged myself back down to the GP who prescribed a second course, this time of erythromycin. Again, I was a star pupil taking my tablets exactly as prescribed. This will do it, I thought. A few days later there was blood in my mucus so I called the GP who said he thought I may have Quincy and that I should go back to get checked over. At this point I had lost over a stone in weight having lived on a hearty diet of about nine grapes all week, I was pale, dizzy and breathless and almost passed out that morning in the shower. I explained all of this to the doctor who politely told me I didn’t have Quincy because I could open my mouth thank-you-very-much and goodbye. So home again, back to bed, casually ignoring the warning of the addictive nature of codeine on the co-codamol packet. I carried on taking my antibiotics. I needed to get better because that second weekend was my sister’s hen do and as Maid of Honour I had planned the whole thing complete with luxury cottages and a nudey man. I shouldn’t have, but I went. A lot of it was spent asleep and I drank only water. Everyone was really worried about me and on the Sunday afternoon my mum suggested that on the way home we stop at A&E. I refused as I felt exhausted after the weekend and felt convinced that we would have a five-hour wait to be told that I did indeed have a bit of stubborn tonsillitis. I just wanted to go home and go to bed, with the caveat that I would go the following day if I didn’t feel any better.

The next day I felt like death. I could barely dress myself. Matthew came over in the early afternoon and we lay in silence, too exhausted to speak, with him stroking my hair, until my mum arrived home early from work and took me to A&E at George Eliot Hospital in Nuneaton, the same hospital where I was also completing my midwifery training. We were waiting for around five minutes before being called through to a small side room with a bed, a chair and a sink. The door was propped open and I could hear the bleeps of medical machinery and the friendly voices of nurses cooing over the sick and injured. A small red-haired nurse arrived to take my vital observations as I sat on the trolley-bed. An ENT registrar arrived to check me over. He suggested that I may be suffering with glandular fever and prescribed IV antibiotics and fluids. I felt grateful and relieved at the prospect of finally feeling better. He inserted a cannula in to my left arm and took some routine bloods. A short while later, he returned with more blood bottles and a concerned expression. “I wasn’t going to but I am going to take some more bloods.” It transpired that the a&e department had a haemocue machine which has spat out a haemoglobin level of 66g/L. From my training I knew this was crazy-low – I had looked after women with 2-3 litre haemorrhages during their births and they hadn’t had a haemoglobin count as low as mine. Bloods were sent to the lab and I was wheeled around into a bay in the main A&E department. The curtains were open and everyone seemed to be moving very quickly. My IV antibiotics were started, I was helped into a hospital gown by my mum and fiancé and wheeled round for a chest xray which was over in a blink. Then I was told that the medical registrar would be along to examine me. When he arrived with two students in tow I recognised him as Dr Patel, a specialist in endocrinology and diabetes whose clinics I had attended as part of my outpatients placement. The two medical students, one male and one female, were nervous as Dr Patel is a forthright character who was obviously putting them through their paces. The female student took charge of my examination, all the while searching for nods of direction and approval. I answered all of their questions easily and seemed to pass the exam. I felt happy, there was nothing wrong with me! In hindsight it would have been much better if there had have been something to explain my seriously dodgy blood results which had since come back from the lab (my haemoglobin was actually lower at 52g/L and my platelet count was in the 30s). Dr Patel said that he thought I may have a virus which was attacking my bone marrow (the first clue which went completely over my head) and that my blood had been sent to Univeristy Hospitals Coventry and Warwickshire to the specialist haematology team (second clue – whoooosh). They admitted me and transferred me to the Acute Medical Ward. My throat was still in agony so I begged for some IV paracetamol which mercifully they supplied. I read my book for a while and text a few friends about my ordeal before settling down to sleep. During the night I was woken by a medical registrar who informed me that the following day I would be transferred to UHCW for further tests and to take a tablet which had been prescribed and recommended by one of the specialists (third clue – whoooosh).

The next morning, having barely slept, the haematology doctor had arrived with a nurse wearing a turquoise tunic. As a student midwife at the same hospital I knew her particular uniform meant she was a specialist in something. She stood at the end of my bed looking sad and not really knowing what do with her hands. The doctor introduced herself as Jhansi Mudanna, a consultant haematologist, and began by asking questions about how I had come to be at George Eliot, why had I gone to A&E? where did I live? were my parents around? did I have brothers and sisters? what did I think was going on? To this last question I explained that Dr Patel had mentioned the possibility of a virus attacking my bone marrow. “It is a little more serious than a virus” she said. That’s when she told me about the Leukaemia. “...but I don’t want you to worry as there is a lot we can do.” I decided that I liked her right away.

After a while a nurse arrived to change my fluids which had been running continuously all night. While she was fiddling with the infusion pump, I saw Matthew’s shoes below the curtain. He came into the bay and sat on the chair. I couldn’t look at him. I wanted the nurse to fuck off but she was taking her sweet god damn time. I held his hand, waiting for her to leave. When she did, I told him straight and we cried and cried and cried.

Before my mum and dad could arrive, I was transferred by ambulance to University Hospitals Coventry and Warwickshire. The paramedic had a German accent and talked to me about the most trivial things until I had to seriously resist the urge to punch him in the face. I arrived on ward 34, the haematology ward, and was placed in a side room with beautiful stencils of birds, foliage and the moon all over the walls. We waited for a while and after around half an hour my mum, dad and sister arrived. My mum and sister were in floods of tears but my dad just hugged me tightly and said simply “you’re going to be okay”. I still felt numb and didn’t cry. It felt like it was happening to someone else and I was just the stunt double who was lying in the bed while the final lighting checks were done. I was sure I would be told to go so they could get in the girl who really has leukaemia, poor thing.

Someone brought a baked potato with beans which I prodded a few times before a young-looking registrar, Francesca, a specialist nurse, Yvonne and an SHO arrived. Francesca was friendly and wise but I was bombarded with information about the type of leukaemia, how it was treated, how chemotherapy works, nutrition, hair loss, infertility, psychology, clinical trials. I don’t think I took the vast majority in but I remember somewhere among the melee she looked at me seriously and directly and said “our aim is to cure it”. And that really stuck with me. This could be cured. There was a cure. That had happened before. That could happen to me. There was reason to hope. I think I made the decision there and then that I wasn’t going to let myself become depressed. The little information I had gleaned from the copious amounts of information I had been given was that at that point we didn’t know what we were dealing with. Until after the first round of chemotheraphy, it would be difficult to deduce anything. So there was no point dwelling on prognosis statistics or fear. It was a scary prospect, the thought that I could die. I suppose the thought that you could die is always scary, and always present. Of course, I was facing my own mortality a little more directly than most, but at that time I was at the very start of such a long journey that my mortality seemed as peripheral and as abstract and as in-the-future as anyone else’s.

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